The best laid plans

Well, it’s been a long time folks, and it’s difficult to know where to start.

Where was I? Just going in for a simple stent to unblock my bile duct, and back into treatment and life, wasn’t it? Hmm, not quite.

I arrived for my stent procedure on schedule on the Friday morning, expecting a simple procedure and overnight stay at best. I got my first reality check that it might not be so simple when the surgeon said to me afterwards he would go in and have a look, and he would “put a stent in if he could”. Errr….ok, so I was really sick, critically sick, and he might not be able to DO this?

When I woke up, the first thing I asked the nurse was did I have a stent and she said NO. I lost my shit immediately, oh well, it’s all over red rover, but the nurse kindly read the report that she had been left and said it appeared that it hadn’t been placed as it hadn’t been needed, as opposed to couldn’t. This was all a bit tricky to understand, but the surgeon came in just after and said that he had looked all through the biliary tree as it is called, a complex tree of bile ducts that runs right through your liver. There were no blockages there, so no need to stent, but there was of course a blockage of the main duct, the common bile duct, which does the lions share of the drainage. He said he was not the surgeon for this, it required an interventional radiologist to try and create a space to place a stent, through the blockage, which was being caused by a tight stricture of cancer each side of the duct. There were of course no guarantees that this could be done, but I was booked in to return to hospital Sunday night for a procedure Monday morning to try.

I woke Monday afternoon to find myself not with a nice tidy stent placed inside me (hey, I was still hanging on that return to life, ya know?), but a dirty great handbag full of bile OUTSIDE my body that I got to carry around everywhere I went. There were small mercies, the nausea, the itch etc were somewhat relieved immediately, but omg, the pain, omg the freaking BAG. They said the liver was much too inflamed to place a stent but they were prepared to have one more go at getting it inside 8 days later, after there had been some time for healing, and I just had to hang in there for that, and hope like hell.

Sometime in those new few days I totally lost my shit emotionally, and I held out no real hope of getting it back again. I recognised the shift in me, in my mental state and it was the scariest thing that has happened to me so far. I couldn’t go home, the pain was diabolical, I ran constant fevers, had two MET calls, verged on an admission to intensive care, and it was also at this time that very severe liver pain started to set in on my right hand side. They did a CT scan and discovered not only did I have a blood clot under where they had placed the drain, and a life threatening infection, but one of my liver mets had grown quite a bit and was pushing on the nerves of my liver capsule. All.the.time. The only thing that could possibly stop the march of this liver met was the cetuximab treatment and I was nowhere near being well enough to start having it. My oncologist is quite conservative about giving treatment, and has only ever let me have it when I am well in other ways. There was something unquestionable here, something unspoken, except by the quiet nods of the liver and oncology teams….this cancer was going to beat me well before I was ever going to be able to start treatment.

In the “olden days” I would have been able to find something. Some hope, somewhere, or at the very least, a will to live. But somewhere on the fourth or fifth day, I woke up and even that was gone. Palliative care had been visiting me every day, just to provide support, counselling, whatever I needed. Well, this day, I needed them to tell me how to speak to my family about letting me go. I always wondered if I would just know. And if there would be something that kicked it that kept you sane during these times. Well, there is, and there isn’t. As the palliative care team sat on the bed and told me that it was my right to decide when I had had enough, I knew I had. I had had six weeks or so of no quality of life at all, and I already knew during that time that if there was no prospect of getting quality back, then I didn’t want to do it any more. And now, there was everything to fight FOR, but nothing to fight WITH. I cried, a bit, but not heaps. I felt that old familiar detachment from everything I knew and loved, but I couldn’t detach myself totally from the fact that I was making that choice, and those who loved me so would have to be the ones left behind to live with it ….without me.

That afternoon however, began the journey back to hope….just when you think it is gone. I’ll be back with another blog soon to continue the story, it is too much to process in one go.

I started your book this afternoon and just finished it. I’ve been crying for a couple of hours now. I was in my early twenties when my Mum went through something like what you are going through. That was 22 years ago. Since then I have had two babies who are now almost grown whom she never saw. I went through post natal psychosis and was then diagnosed with bi polar disorder. I had to raise my babies without my mum and that was hard. What I want you to know is there are forces that you cannot imagine until you are in this situation. Mum died on May 16 and every single year since something great has happened on that day – the first year after she died I graduated from Uni (On May 16th!) The following year we signed a lease on May 16th, and so it has continued. Aside from that our relationship has continued to evolve in ways I cannot explain. Shortly after she died (in 1994!) I was talking to her in my head, describing all of my problems when I hear her clear as day saying “Junine, I can’t worry about that right now, I have to look after Jennifer (my sister.)” That was so like Mum that I laughed out loud. When I had my first kid and I was still in hospital I woke up and I saw a pillar of light and I somehow knew it was Mum. Then a couple of years ago I had a dream where she said that she wanted to go to the party and she thought I would be alright from here. I woke up crying, but I knew I would be fine and that it was time to let her go. (I was in my forties by then.) I send you all my love Julie. I am crying for you and the fella and the fairies but they will be OK because they will still have you. You will not be gone – you will just in a different dimension….. I promise. Junine xxxx

Wow Julia, you are amazing and if anyone deserves to beat this, you do. Please know, what a fantastic example and inspiration you are to anyone else, going through this. God’s Angels surround you, 24/7, and I will continue to pray for a miracle for you. xox

I just this morning came to check on your Facebook page to see where you were at.

I’m so sorry you’ve been having such a terrible time. I often think of you, as I am sure many others do. I hope you feel surrounded by love.

I’m so happy that you’re home and looking forward to treatment, all the best wishes this is successful.

My dad has had an eerily similar experience to you, at the exact same time. He’s back in hospital now with the same liver/stent infection and has had an excellent improvement in 24hrs so hopefully he’s home soon.

It was super comforting to read your experience of hospice, I have feared this for so long. So thank you for sharing.